Long term "high oncotype test" survivors
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Hi S and thank you for your reply. No i totally understand that a high onctpye score and PR+ ER+ and HER- does respond to chemo. The thing is, I have lung cancer since 2007 (I was operated on then) it is non-smokers cancer and it is very slow growing. Also, it DOES NOT RESPOND TO CHEMO - so Im thinkoing if I take the chemo it will probably kill the only good cells I have in my lungs - and since I am already comprosmised in that area - the of the breast cancer of coming back are about 23% - i just feel there has to be something better out there - I am looking at all the chemos theyre using for invasice ductal cancer and most of them are from the 1940s and 50s. There hust has to be something better. Anypone have any other ideas?- Jana
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Take Tamoxifen, it helps with other cancers too.
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HI THERE: what is a DX? All I know is that the tumor was 9 millimeters, it was ER and PR+ and HERP-. It was not found in any of the lymph nodes and it is midly aggressive. Im sure I didnt ask my doctor enough but I dont know what else I shouldd ask about = please tell me what I should ask him/
thank you, Jana
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Jan---DX=Diagnosis, you pretty much said it all...If you look above, mine is IDC Stage 1 Grade 1. Were your nodes checked???
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Thought I'd post another update since it's been another year roughly. I'm still alive, still sucking up oxygen on planet Earth, still speaking my mind. Gave up the motorcycle for the most part and took up sky-diving. Don't think that will last much longer. About to move on to boats and give that a try. And no, it will not be a slow canoe that I buy. Took up yoga this year which is great and supposed to help bone density. Counting on my little fingers the time to (early) retirement which is when life is going to get GOOD and CRAZY FUN!!!!! In short, life is beeeeyouuuuuteeeefulllll!
It's been almost 7 years for this high Onco DX score mujer. The high score is not a death sentence, it just means that you'll very likely benefit from chemo as compared to someone with a low score.
Really, life is much better since the cancer diagnosis. I'm happier, more content with myself, more willing to speak up and be heard, and I have whittled out of my life those poisonous people that drag you down. What's left is a great deal of peace and happiness and enjoyment of life. If I'd come back as a low score, I probably would have brushed off the whole cancer thing and gone back to my old ways. The high score is a blessing for me - it keeps in mind that I have to focus on what is important in life and seek out what I really want to be doing so that I keep myself in an emotionally good place which in turns leads to a good physical state and better survival.
Life is good. See y'all in another year!!
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Squidess, did you take Tamoxifen, I was on it but am now taking a break from it do to severe hip groin pain.
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squidess..I also notice those that are PR- have a high Onco DX score....Coincidence, I don't know...
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Squidness - thank you for posting what you did!
Loral - ER+ PR- and high proliferation are considered luminal B subtype, as opposed to the less aggressive ER+ PR+ lower proliferation luminal A. I have barely positive PR, high proliferation, and a high oncotype. MO told me I was luminal B. I'd provide a link or two, but Mac's can't cut and paste at BCO.
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Loral, I had a hysterectomy and the ovaries ripped out and I'm doing 10 years of arimidex. The hysterectomy was laparoscopic, and it was a piece of cake. I hope you can find the right hormonal treatment that works for you and you don't have that hip pain. I had a lot of hip pain for years on one side, but in my case it ended up being soft tissue and I fixed that pretty easily once I found the right specialist. Now I have no excuse to skip the gym pfffft. So I bought myself one of those Costco saunas for after the gym. Little Christmas present to myself.
Kam, Loral, I think the trick for us is to get through the first 5 or so years. Looks like maybe the risk is lower after that for those of us with the high oncotype scores. In particular, I've seen some recent studies that indicate that the lower progesterone, while not so great in the first 5 years, might actually be pretty decent for long term survival. It's early still with the studies, but there have been a couple that point to PR+ as less favorable at 10+ years out.
From everything I've been able to sort out spending way too much time reading studies, the high oncotype score predicts risk during the first 5 years and isn't a predictor of long term survival after 5 years. In other words, being at high risk of recurrence in years 0-5 doesn't mean that you still are in years 6+. As we're seeing more studies on long term survival with BC, it looks like having made 5+ years, the risk of recurrence from that point forward may actually be pretty good for us with no/low PR and high oncotype scores.
Why do I read so many studies? Because it annoys my oncologist greatly when I bring them up, and I really think I should get some fun out of a $450 appointment!!!
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Like Kam I am also Luminal B subtype - barely ER+, PR-, high Oncotype. I would assume high proliferation but I have no Ki-67 to prove it (can only extrapolate based on the RS). This article was very informative for me:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC343009...
I just had my two-year cancerversary - and am still here, no recurrence yet, no signs of recurrence. I'm keeping active, working on changing my diet for the better, and doing what I can to keep this disease from returning. I know there are many things I can't control - but here I am, and here I will stay. :-)
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Squidess...thanks, keep reading, I try to to keep my MO busy listening to me at my appointments to.
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NancyHB, that article is sobering, but there are others that show a good outcome for luminal B in the long term. Definitely conflicting findings. So I think the jury is still out on the luminal B. I believe that luminal B is a large category that needs further subdivision.
Congrats on 2 years!!!!
For those of us who are pr-, maybe this article will bring some hope about long term survival. The two factors that were significantly related to late recurrence were pr positivity and lymph node involvement.
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It's a challenge to find articles that are uplifting and full of hope, especially in cancer research. Hopefully there will be more and more of them over the years.
It has taken me the last year to finally come to terms with the fact that no matter what I read, no matter who I talk with, no matter what goes on around me - I can't predict what my future will be. Before my dx I assumed I had a long life to live; I never would have guessed I'd have BC. Even now, I cannot tell you what tomorrow will bring, for any of us. It is a hard reality to acknowledge, but it is what it is. I know the risks of forgoing Tamoxifen, and eating ice cream; I acknowledge the benefit of giving up alcohol, and exercising as much as possible. I do the best I can with the information I have, and will never beat myself up should I have a recurrence.
My yoga teacher sent us off with this thought: Worry does not empty tomorrow of its sorrow; it empties today of its strength.
Please keep sharing your awesome research - I'm always up for a good read on a cold night!
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Hi everyone. It's been a while since people have posted on this thread, but I thought I'd see if there are others with high oncotype scores. I scored a 61, and am doing chemo now. I think the score hit me just as hard as the news of BC. Trying to get over it, but it still has me freaked out. Would love to hear any updates of long time survivors with high oncotype scores. thank you!
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Hope - with that score I wonder if you turned out to be Her2+?
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No they ran path using two different assays and it was Her2-
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Hi H0pe, I finished treatment last September after scoring 44 on the Oncotype DX test. Always nice to hear from others with high scores. Best of luck with your treatment.
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H0pe, I'm the lady that started this thread years ago. I had a oncotype score of 52 in 2005. At the time my oncologist had never seen a score that high and from what I can glean from her, she hasn't seen many since either. I still go to see my doctor once a year and I have been cancer free for 9 years now. I thank the Lord that I rarely think of that horrible score anymore. I started this thread because I could not find anyone with a score that high on the internet, and I was eagerly grasping at something or someone to give me encouragement. Well, I'm here to give you encouragement. I recall reading a study a few years ago that stated that women with a high oncotype score that had chemotherapy and took Tamoxifen or one of the other hormone inhibitors for 5 years reduced their recurrence almost as much as those without high scores. I printed that study out but can't seem to locate it now. I also recall a health care provider telling me that many more women survive breast cancer than ever before and I hung my hopes on those words and NEVER talked with discouraging people. I wanted uplifting words. If I ran across a person with a less than a determined and hopeful outlook, I steered clear of them. The years have flown by and I'm super happy, feel very healthy and am still very hopeful. I wish you all the best in your treatment and believe that you can go on and be an encouragement to someone else in 9 or 10 years.
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Thank you for your encouraging words!
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1OUgirl - thank you for coming back and coming back to BCO for us high oncotype scorers. It would be so easy for you to just move on.
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hOpe - there's another woman on BCO with a higher score than mine (we go to the same MO) and she is approaching the 5 year mark. I wish I could find the Japanese study I read, I think it referenced Ki67, not Oncotype score, but Ki67 is a strong component of Oncotype. Sixteen of the 17 recurrences for those with higher Ki67 scores occurred in year 2 to 5. One occurred before year 2. None after year 5. Not that it is totally comforting before year 5, but I'd like to think that one day I could stop worrying!
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Thanks Kam170 for the info. I have never seen that study but my oncologist said that distant recurrence is rare after 10 years. Of course, it still happens at times so we will always have a very small chance.
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I just want to say thank you to IOUgirl and to NancyHB for such positive and thoughtful words. I have been trying to keep my frame of mind in a positive place, recognizing none of us know the future. The fact that this is all so out of our control is so hard but everything in life is. I have to take it one day at a time.. Tomorrow I go to the MO to get my Oncotype score and learn what's next. I am trying to brace myself for that and this thread really helped. Thank you.
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Let us know LovebeingNana - hoping for a very low score for you!
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Kam170,
I believe I know the study you're referring to. I found it very encouraging. The lead author is Nishimura (first name Reike or Reiki I think). The title was something like Factors in Late Recurrence of Breast Cancer and it looked at < 10 years and > 10 years. As I recall, nearly all of the high Ki67 were in the early years, as you mentioned, and the authors stated that there were no recurrences after 10 years with a high Ki67 score.
I really think that this oncotype score is often portrayed a bit inaccurately and that scares women. It tells us who is likely to benefit from chemo (high scores). All it really says is that we are at high risk of recurrence if we do NOT treat with chemo. It doesn't necessarily mean that we are still at a high risk of recurrence if we do chemo.
Peace,
Squidess
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love this thread...tho I am an intermediate.
LOVE your attitude squidess, and love what the yoga teacher said about worry.
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squidess - Oncotype assumes Tamoxifen will be taken for at least 5 years - that's just a given in the Recurrence Score. Additional benefits are gained by doing chemo. So, for those of us (and there are many out here) who do chemo but do NOT do Tami or an AI, our chance of recurrence increases. And unfortunately, my MO believes the Ki67 is far LESS reliable a predictor of future recurrence than the Oncotype - so I don't have that score (Kam knows my ongoing frustration with THAT!)
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Hi NancyHB,
I've got to respectfully disagree about the chance of recurrence increasing for high score women who do chemo but not hormonal treatment. The studies look at (as you said) tamoxifen and the benefit of chemo vs. no chemo. For those of us who dinged the bell on the oncotype score, it is very likely that we do not respond well to hormonal therapy anyway. So I believe there's every reason to think that if you do chemo but can't tolerate the hormonal treatments and you're a high onco score, you're in very good shape for the future. The hormonal treatment probably wasn't going to work well for us anyway. Is it better to take it if you can? Maybe. Extra insurance perhaps, but at the cost of some bone density. But if you can't take it, it probably does not increase the odds of recurrence much if at all.
I wonder if your oncologist has read very recent studies about long term survival. They indicate that the Oncotype score is not particularly predictive of survival after 5 years. It's great in years 0-5 and not so great after that. It looks like the factors that put us in the high onco score category are not nearly as relevant after those first 5-10 years.
I just object to oncologists being so gloomy about the high oncotype scores. It's really not much more than a good indicator that we ought to do chemo for our best odds of survival. Low onco scores aren't going to benefit from chemo, high onco scores aren't going to benefit from hormonal treatments. I really wish that they had categorized us into Hormonal Treatment, Intermediate, Chemo Treatment. That would have been a much better classification and not scared the behoosus out of us in the high category.
And I just noticed from your sig that you're a er+/pr- sistah. It's a good club to be in :-) There's a couple of studies that indicate that Pr- is at lower risk of recurrence after 5-10 years than pr+. We just gotta get through those first 5 years, and with all that chemo you did, I betcha you're in really good shape. I did 4 rounds of taxotere and I'm still walking around the earth annoying my boss and coworkers. Ha!!
Hugs,
Squidess
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I read thru' this thread and there is a lot of misunderstanding going on.
The RS score on the Oncotype test is an indicator, a tool to determine whether a person will or will not benefit from chemotherapy. IF you have a high score, it does not mean that you are more likely to have a recurrence. It means you are more likely to benefit from chemo. (Conversely, the low scores get the most benefit from hormonal therapy.)
If you want to get an idea as far as your risk for recurrence, looking at the factors in your pathology and staging will give you some idea; as will Cancermath (already mentioned); as will Adjuvant Online.
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Squidess, Hi!
You stated. ...And I just noticed from your sig that you're a er+/pr- sistah. It's a good club to be in :-) There's a couple of studies that indicate that Pr- is at lower risk of recurrence after 5-10 years than pr+.
Just wondering if you have a link to these studies. I am very interested in this information and having done a lot of research, have found nothing that indicates this is the case. It would be very comforting for me to see that informatin.
Thanks, MsP
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